NHS access to the drug, which costs over £500,000 per patient per year, had been due to expire at the end of May, however an ...

Seven-year-old Lena and Nina will eventually become blind and bedridden before their lives are sadly lost to the cruel ...

June 9th is International Batten Disease Awareness Day. It's an opportunity for those dealing with this horrific, ultrarare condition to share stories, spread awareness, and maybe spur on much ...

The foundation is named for a Minnesota girl, Helen Betty Born, and raises awareness and funds research to find a cure for CLN2 Batten disease, which affects two to four of 100,000 children in the ...

The family of a nine-year-old girl with a life-limiting illness has launched a mission so she will be able to make special ...

Kerri Taylor smiles when she talks of her granddaughter, Alara. Oliver Rodden is a journalist for The Goulburn Post. He reports on the local community, politics, environment, culture, and crime. Above ...

Despite the unrelenting rain Saturday morning, dozens of friends, family and supporters gathered at Eagle Elementary for a 5K run/walk to support a member of their own community — little Ollie Thoene, ...

INDIANAPOLIS (WISH) — Helen’s Pink Sky Foundation is hosting a lemonade stand event to raise awareness and funds for Batten disease research. The event, inspired by Helen’s upcoming fourth ...

The group helps to provide money for caregivers of children with special needs or life-threatening medical conditions. This ...